Hi Everyone,
I joined the website in September, but I have not posted. I have LC. When I first found the website I kept thinking that the diet did not play a role; it can't be I kept saying. After discussing it for months with my mother she begged me to go gluten and diary free. It works! It took about 3 weeks to see a difference.
This is my story. For 10 years I would have bouts of D usually on the weekends and Mondays; that all makes sense now. I followed the sugar buster diet and only ate pasta and bread on the weekends. I did not have much dairy in my diet except for cream in my coffee daily, cheese and butter on weekends. I associated the D to peri menopause due to having a cycle every 2 to 3 weeks for 10 years. In April 2011 the D started getting worse by June I was going 8-15 times a day. I would get up at 4 AM and after 4-6 movements I would start the immodium and take 6-8 to get through the day. When I got home it started all over again. For the prior ten years when I had the bouts I would take 2 immodium. At first I thought something was seriously wrong and did not want to go to the doctors. I finally went in July and he immediately said that I would be put on the urgent list for a colonoscopy. I go to MGH in Boston. He thought I had Chron's, Ulcerative Colitis, or a tumor. I had the colonoscopy late July. The GI performing the colonoscopy said he would take biopies. I did have one polyp. The PCP had me on the Pepto Bismal treatment when he first saw me. When I got the results the GI said to stay on the Pepto Bismal. I did the Pepto for 12 weeks with very little relief. Then I was put on the Entocort and did 9mg for five weeks and started to have improvements. After the 5 weeks of 9mg I did 6mg for 6 months and now I am on 3mg a day trying to wean off. Once I went gluten and dairy free in mid January I finally got myself to 2-3 normal movements a day. I did have issues when I had diary or gluten since then. At a restuarant I ordered vinegar peppers and pork chops I only asked about the gluten. My mistake when I got home I had an accident and without realizing it. I called the next day and the peppers were sautee with butter and cheese. I kept saying it was the best meal I had in four months! The next episode I decided to have some of son's french fries at a restuarant that I knew were not gluten free and decided to see what would happen. I paid the price the next day. I am also low on vitamin D and I was taking 5000 a day before the blood test. I am now on a prescription for vitamin D my results was 26 before the prescription. The best part was when I told my PCP in October that I was going to try to go gluten & dairy free and his reply was that would be a life change. I said and getting up at 4AM to be out of the house in 2-3 hours isn't? I told him that I need a chalk board in the bathroom to track how may movements I have because I lose count.
I will do the Entolab testing when I am off the Entocort for 60 days. I see a Naturopathic Doctor(started in April) that will run the food sensitivity tests when I am off the Entocort. The price is much lower than MRT. When I went to see her she said how did you know to go gluten and dairy free. I told her about the Potty People. She said that was going to be her first suggestion.
In the midst of all this I was diagnosed with osteopenia in January. The end of February I slipped getting out of the shower and fracture 5 ribs. If I was not on the diet I would not have been able to deal with D all day.
I did go to BU medical center for a second opinion in October/November after hearing a commercial on the radio saying are you sick of comics making fun of stomach issues. If you live in the Boston area you might have heard the commercial. He wanted to do too many tests and I was so sick at the time I did not follow up. It was enough to get through a ten hour work day feeling horrible and traveling by car around New England. On the weekends I slept a lot. The LC really had me out of sorts. Now when I look back I do not know how I functioned!
The Entocort elevated my blood pressure and I am on medicines for that too!
When I went to bed my stomach looked like I was 6 months pregnant and each morning it would be 6 hours of listening to a Tsunami in my stomach. This finally stopped after 2 months of the diet.
Well it has been a long road but you can get your life back if you follow a strict diet. My goal is to get of the Entorcort June/July based on my current condition at that time.
For career purposes I never told anyone about my condition. In my position I cannot afford having them say she is off her game; I work with mostly men. I do get questioned about my weight because I did not need to lose weight. I lost 18 pounds. I just ignore the question and talk about something else. The weight lost stopped after I go the diet under control. It got to the point I was afraid to step on the scale.
When I did tell family members and friends about my new diet of course their comments was I do not believe in food playing a role. Just ignore them!
Thank you for this website and it has changed my life. For someone new it is a huge life style change but once you get the diet under control you do get results. At this time I have not taken out soy and it could become an issue when I am off the Entocort.
Thank you everyone!
Denise
Thank You!!! You can get your life back
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Mars, starfire, Polly, Joefnh
Hi Denise,
Welcome to our internet family. It's good to see you posting. Thank you for the kind words, and thank you for such an upbeat report for your first post. It's inspiring to read about how much progress you've already made by taking charge of your own health.
I hope your recovery progress continues until you feel better than you've felt in at least 15 or 20 years.
Tex (Wayne)
Welcome to our internet family. It's good to see you posting. Thank you for the kind words, and thank you for such an upbeat report for your first post. It's inspiring to read about how much progress you've already made by taking charge of your own health.
I hope your recovery progress continues until you feel better than you've felt in at least 15 or 20 years.
Tex (Wayne)
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Denise, thanks for posting and welcome! Your success story is a real testimony to the power of proper nutrition. It helps me keep going when I have a setback despite my best efforts. It also helps me put up with the naysayers who think I'm a bit "off" for following some gluten-free fad. I had the same eureka moment when I got my EnteroLab results back and saw so many food sensitivities!
Again, welcome.
--T
Again, welcome.
--T
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Denise
I am so pleased you have taken control! Isn't it amazing the contrast between what others (including doctors) and we all here know to be true? Best of luck. Hopefully you can heal all that inflammation without further eliminating foods. Your family and friends will become believers....mine have.....when they see your progress.
Chris
I am so pleased you have taken control! Isn't it amazing the contrast between what others (including doctors) and we all here know to be true? Best of luck. Hopefully you can heal all that inflammation without further eliminating foods. Your family and friends will become believers....mine have.....when they see your progress.
Chris
Thank you for the welcome!
I should have posted back in August through December I was on a diet like I had the flu. Soup, chicken, toast and white rice with no relief. After reading the Potty People website and reading the book Wheat Belly is when I decided to go gluten and dairy free. I still eat a limited diet but have added small amounts of different foods. I just started to eat salads again. My pediatrician who was my son's pediatrician of course because of the age gap does not believe in the gluten free diet but he recommended to treat myself like I was an infant. When I had my son he would have each food type introduced for 3 days before starting another food in each category.
Leah, I will admit I am afraid to completely wean off. I do not want to go back to running for the bathroom and hope I make it in time.
Nancy, the naturopathic doctor has me taking digestive enzymes, L Glutamine, and some nasty smelling fish pill. She does not believe the PCP did the all the testing for celiac. I have questioned both doctors are you positive I am not celiac. Of course both say I am not. I will send the name of the test and maybe someone can let me know it they should have did more testing. At this point I cannot reintroduce gluten for more blood tests. It's amazing the insurance company will not pay for these appointments but will pay $1,500.00 a month for a presciption. I had that conversation with the insurance company. The doctor had me see a nutritionist to make sure I was getting my proper nutrition. That was a waste of my time.
Denise
I should have posted back in August through December I was on a diet like I had the flu. Soup, chicken, toast and white rice with no relief. After reading the Potty People website and reading the book Wheat Belly is when I decided to go gluten and dairy free. I still eat a limited diet but have added small amounts of different foods. I just started to eat salads again. My pediatrician who was my son's pediatrician of course because of the age gap does not believe in the gluten free diet but he recommended to treat myself like I was an infant. When I had my son he would have each food type introduced for 3 days before starting another food in each category.
Leah, I will admit I am afraid to completely wean off. I do not want to go back to running for the bathroom and hope I make it in time.
Nancy, the naturopathic doctor has me taking digestive enzymes, L Glutamine, and some nasty smelling fish pill. She does not believe the PCP did the all the testing for celiac. I have questioned both doctors are you positive I am not celiac. Of course both say I am not. I will send the name of the test and maybe someone can let me know it they should have did more testing. At this point I cannot reintroduce gluten for more blood tests. It's amazing the insurance company will not pay for these appointments but will pay $1,500.00 a month for a presciption. I had that conversation with the insurance company. The doctor had me see a nutritionist to make sure I was getting my proper nutrition. That was a waste of my time.
Denise
Denise
Welcome Denise from another New Englander! So happy that you're finding relief. I too am on Entocort although I'm stretching it out to 1 pill every 3-4 days and I am attempting to wean off slowly. Please keep us updated on how things go. I am also doing Glutamine 3x a day and have gone GF/DF. I'm also interested in how things progress with your ND, as I've debated trying to find someone in my area.
Cathy
Cathy
Denise,
So happy to hear of your progress. I also have LC and had fairly quick results when I went GF/DF. Of course it took 2 years to get to "normans" and I still struggle with mini-flares all the time (mostly from food cross-contamination or too much fiber or alcohol). I also never got confirmation that I was not celiac. I have the gene, so I strongly suspect it. I'm also avoiding soy, but not 100%. I don't eat tofu, drink soymilk, eat food made with soy flour, soy protein, etc. but I do OK with a little soy lecithin in dark chocolate, GF soy sauce, and food cooked in soy oil. You might find the dose of soy makes a difference in your symptoms. After all, avoiding ALL soy is nearly impossible nowadays, as many here know.
So happy to hear of your progress. I also have LC and had fairly quick results when I went GF/DF. Of course it took 2 years to get to "normans" and I still struggle with mini-flares all the time (mostly from food cross-contamination or too much fiber or alcohol). I also never got confirmation that I was not celiac. I have the gene, so I strongly suspect it. I'm also avoiding soy, but not 100%. I don't eat tofu, drink soymilk, eat food made with soy flour, soy protein, etc. but I do OK with a little soy lecithin in dark chocolate, GF soy sauce, and food cooked in soy oil. You might find the dose of soy makes a difference in your symptoms. After all, avoiding ALL soy is nearly impossible nowadays, as many here know.
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Hi Denise. You know what? it doesn't really matter whether you test positive for celiac. Most of us don't, but are just as intolerant to Gluten as someone that does. Like Tex said - there has to be significant damage done already for a positive reading. You are GF, so why worry about it?
Zizzle, I think I react to soy like you do. Small doses seem okay. I'm still not sure about the GF soy sauce though. I'll have to do a test soon with a stir fry dish.
I also do l-glutamine. Don't know if it helps, but it doesn't hurt :)
Leah
Zizzle, I think I react to soy like you do. Small doses seem okay. I'm still not sure about the GF soy sauce though. I'll have to do a test soon with a stir fry dish.
I also do l-glutamine. Don't know if it helps, but it doesn't hurt :)
Leah